Improving End-of-Life Care in California’s C A L I FOR N I A Nursing Homes H EALTH C ARE F OU NDATION Introduction HSM organized four focus groups to discuss The California HealthCare Foundation (CHCF) the nature of end-of-life care in California focuses considerable attention on the nature and nursing facilities. Two focus groups, of ten quality of end-of-life care in California nursing participants each, were comprised of nursing Issue Brief homes. This attention has revealed substantial home administrators; another group (nine anecdotal evidence that too few nursing home participants) was of nursing home directors of residents receive effective palliative care at the end nursing (DONs). The nursing homes represented of life. One element of CHCF’s focus on the issue by these administrators and DONs were a mix of has been to sponsor a project by The HSM Group facility size and for-profit/nonprofit status; all were Ltd. (HSM) to study barriers to appropriate skilled nursing facilities (SNFs). The final focus end-of-life palliative care in nursing homes, and group consisted of eight relatives of nursing home potential approaches to reducing those barriers. residents who had died within the previous 12 This study explored a number of specific, related months; many of these family members had been questions: their relative’s appointed health care surrogate. K Why do so few nursing home residents have effective advance health care directives? Another project component was a written survey of the three professional focus group members K Why are nursing home residents often (representing 39 facilities), which sought transferred to hospitals during the end-of-life information about each facility’s end-of-life care period, and how many of these transfers are policies and practices. HSM also conducted necessary? interviews with a dozen experts in the nursing K What aspects of the nursing home context home field, including educators, providers, and constrain the delivery of palliative care at the executives with various long term care associations. end of residents’ lives? Low Percentage of Formal Advance The study followed up on these questions by Directives examining how the problems they highlight One of the major factors in the low numbers of might be addressed, and by whom. This report California nursing home residents who receive summarizes the study’s findings. appropriate palliative care at the end of life is how few of them have properly executed advance Nature of the Study directives. For California nursing homes residents, The HSM study, conducted during October and data available in the first three months of 2008 November 2007, had three major components: suggest how low the rates of completion are: Only provider and family focus groups; a survey 1.1 percent of residents have a properly completed regarding facility policies and practices; and “living will” (according to the Minimum Data S eptember interviews with experts in the nursing home field. Set, a federal data base with information about 2008 individual nursing home residents), while 18 percent have during care conferences. However, facilities report that a durable power of attorney for health care decisions. they do not maintain statistics on the number of residents These low figures are particularly troubling given that with completed formal advance directives. many nursing homes residents do, in fact, express preferences for intensity of care: 42 percent do not wish In sum, the nursing home admission process does not to be resuscitated, and 7 percent do not wish to be now effectively address the problem of the low number transported to the hospital. Cultural differences also play of Californians with advance health care directives. As a role in the use of advance directives: Providers noted a result, most residents who might want and benefit that Latino, African American, and Asian American from palliative care are without the documentation that residents at their facilities have been somewhat more most effectively increases the odds that they will receive reluctant than others to embrace the advance directive. such care. The study also revealed inconsistency and confusion Unnecessary Hospital Transfers among nursing home administrators and staff about what Study participants were unanimous in believing that constitutes a legally binding advance care document. Most many residents are precipitously transferred to hospitals facilities (86 percent) in this study have new residents for treatment during changes in condition near the end complete the facility’s own version of a Preferred Intensity of life — sometimes in a round robin of transfers and of Care (PIC) or Preferred Intensity of Treatment (PIT) returns — instead of remaining in the nursing home and document. But these documents are neither legally receiving appropriate palliative care there. The study binding advance directives nor medical orders that staff found several aspects to this phenomenon: confusion and and attending physicians are compelled to follow, and inadequacies regarding advance health care directives; they may conflict with an existing advance directive. staffing insufficiencies; fear of litigation and regulatory citation; financial disincentives; and a climate within Also, it is often an admissions clerk, rather than a nursing homes that seeks to avoid the stigma of death in professional staff member, who handles the PIC or PIT the facility. process. This process rarely involves in-depth discussion with resident and family, since it is usually well beyond Poor Follow-Up on Hospital Transfers the clerk’s work capacity or competence to conduct a Nursing home administrators in this study all reported value-based end-of-life care discussion. Moreover, while that a high percentage of nursing home resident admission may seem an obvious time to discuss an hospital transfers are unnecessary. Yet a survey of these advance directive, the circumstances in that moment administrators, other nursing home officials, and DONs showed that only 61 percent of their facilities performed are often very stressful for both the resident and family routine quality reviews to assess the appropriateness members. For this reason, admission may in fact not be a of transfers. And upon the death of a resident, only good moment to encourage and discuss, let alone actually 45 percent of the facilities regularly reviewed the quality prepare, an advance directive. of care that had been provided at the end of life. The intake process is at least a good opportunity to identify who does and does not have a directive. In some facilities, if a resident indicates that he or she does not have an advance directive, this fact is noted in the resident’s chart, and the topic might be raised again 2  |  California HealthCare Foundation Lack of Clarity Regarding Resident End-of- dying frequently leads them to consider the resident’s Life Preferences change in condition as an episodic problem to be The high number of end-of-life hospital transfers is aggressively treated, including transfer of the resident to traceable in large measure to confusion in nursing homes the hospital emergency room. regarding residents’ end-of-life care choices. This problem becomes particularly disruptive when an attending Staff Inadequacy physician or other staff member is faced with a resident’s Both administrators and DONs in this study emphasized suddenly worsening condition. When the physician or that hospital transfers are in large part the result of staff other staff member has doubts about the proper course of inadequacy. This deficiency has two components: staffing action, the default position is usually to send the resident levels; and poor staff education and training in palliative to the hospital. care and end-of-life care decision-making. In the first instance, confusion about what to do arises Staffing Levels from the low number of completed advance directives (as When asked what would have improved the dying discussed in the previous section). Moreover, even if staff experience for their loved ones, the single factor most members know of an advance care directive expressing often mentioned by family members in this study was the resident’s wishes, a surrogate named in the document increasing the number of staff. Nowhere is the staffing may override what appear to be the document’s clear shortfall more starkly illustrated than in the decision to directions. Both administrators and DONs interviewed transfer residents to the hospital emergency room. for this study reported that frequently an emotionally wrought family member who is also the advance directive Many attending physicians visit nursing home residents surrogate ignores the resident’s specific preferences. This infrequently — once a month, or less. This means that problem may be exacerbated when the resident completed they are unlikely to know, from clinical observation, when a PIC or PIT form that contradicts the terms of the change in a resident’s condition is underway or imminent, advance directive. and so will not have considered the question of hospital transfer for that resident. Infrequent visits also mean that Also, because there is widespread discomfort talking about physicians are less likely to discuss treatment preferences death, discussion with family too often fails to make with the resident and family members. clear when a resident is in the process of dying. Family members’ lack of understanding about the transition to When a transfer decision needs to be made, the attending physician probably will not be at the facility, and may not even be available for consultation. A high percentage of Public Guardians transfers occur in the evenings and on weekends, when A problem raised in two focus groups was the case of neither a DON nor a physician is usually in the facility. residents — many with dementia or Alzheimer’s — who When the attending physician is unavailable, the call goes have a public guardian. Regardless of the resident’s condition, providers in this study asserted that public to a covering physician who probably is unfamiliar with guardians usually choose not to make decisions that limit the resident and family, is unlikely to come to the facility treatment, either upon admission or during a change in to assess the situation, and tends to choose the simplest the resident’s condition. This leaves the facility without course of action — transfer to the hospital. Even when the directions, resulting in hospital transfers, as well as resuscitations, tube feedings and other interventions. attending physician is available by phone, limited clinical information about the resident’s present condition, plus Improving End-of-Life Care in California’s Nursing Homes  |  3 an unwillingness or inability to come to the facility, Efforts by the nursing homes in this study to compensate usually leads to a recommendation of hospital transfer. for the lack of formal end-of-life education of physicians and nurses present a mixed picture (from a small When a resident has a sudden condition change and no survey sample of 39 facilities). Almost all the facilities physician or DON is available, immediate responsibility provide staff in-service education on pain management falls to staff — usually Licensed Vocational Nurses (LVNs)  (96 percent), hydration and nutrition (93 percent), and — not trained to handle such crises. LVNs focus on the role of hospice in nursing homes (93 percent). But care delivery rather than clinical problem solving, and only 58 percent of these nursing homes provide training many lack advanced clinical skills required to assess and in facilitating end-of-life care decisions. And these nursing interpret a change in condition, which would also be homes are significantly deficient in setting expectations beyond their scope of practice. Also, LVNs may fear for staff on providing quality end-of-life care: Only repercussions if a patient dies while under their care, so 14 percent of surveyed facilities define quality end-of- they tend to resolve doubts about care in favor of hospital life care as part of job descriptions, and only 7 percent transfer. include the subject in performance evaluations. Administrators in this study felt that greater presence of Fear of Litigation and Regulatory Citation social workers or geriatric nurse practitioners in facilities Providers in this study reported that among physicians, could lead to better coordination of end-of-life care, nursing home staff, and facility administrators alike, there including reduction of hospital transfers. But because of is substantial fear of litigation if treatment is withheld cost, most facilities are unwilling or unable to employ from a resident who appears to be near death, especially nurse practitioners or professionally trained social service if this is contrary to some family member’s wishes. [See personnel. “Is There a Doctor in the House? Physician Liability Fears and Quality of Care in Nursing Homes,” California Staff Training and Education Healthcare Foundation, August 2008, www.chcf.org.] Most physicians, nurses, and nursing home administrators This makes the simplest course of action — to phone for receive little formal training regarding death and dying, or an ambulance and send the resident to the hospital — also palliative care. Pain management and end-of-life training the “safest” course of action. The irony that this anxiety is provided to staff in some nursing homes by a hospice does not arise from concerns about the resident is not lost service that works with the facility, but this training is on nursing home staff: “The dead person isn’t suing us,” neither extensive nor systematic. The lack of training as one administrator put it, “[it’s] the family.” not only limits physicians’ and nurses’ ability to conduct difficult conversations with residents and families about Another concern for nursing home staff is the potential end-of-life preferences but also dissuades them from for regulatory disciplinary action when treatment is pursuing such conversations at all. withheld, even when following a resident’s preferences. Withholding certain care such as nutrition and hydration Admissions personnel are usually charged with asking new increases the likelihood of scrutiny by surveyors and the residents about their end-of-life preferences and advance need for documentation by staff. Participants in this study directives, but these clerical staff members are not often believe that many facilities are so fearful of such citations provided with professional training in this regard. that they continue active treatment — forcing a dying resident to keep doing physical therapy was one example cited — to the resident’s detriment. Families reported 4  |  California HealthCare Foundation that they were uncomfortably aware of this litigation/ transferred to a hospital and then returned to the facility. regulation anxiety, believing that staff concerns about If the resident is covered by Medi-Cal, the facility is strict adherence to regulations tended to interfere with paid for three days to hold the bed — without providing appropriate personalized care of the resident: “Especially services — while the resident is in the hospital. When when you have Medicaid and Medicare involved and you the resident returns, the SNF can be reimbursed, for a ask them something and they start coming back with time, at the higher Medicare rate. On the other end of all their rules to the point where you just want to go in the equation, providers note that it takes more time, staff, there, grab your mother and run and go, ‘We’re out of and stress to provide good palliative care, yet there is no here.’” additional Medi-Cal or other reimbursement for doing so. Another financial aspect inhibiting palliative care involves Mixed Message from Regulators About Hospice physicians. Thorough communication with residents Hospice is one way to deliver appropriate palliative and family is often key to choosing palliative end-of-life end-of-life care to a nursing home resident. But care, as opposed to treatment interventions. But doctors in addition to financial factors complicating the are not reimbursed for talking (especially extensively) to use of hospice in nursing homes (see “Financial Considerations,” below), providers report that facilities patients and families about end-of-life care, while they are using hospice have recently come under scrutiny by compensated for performing procedures. And physicians surveyors for duplication of services and thus technically receive higher reimbursement for services rendered in a “double dipping” of funds. Providers recount surveyors hospital than in a nursing facility. asking to see the charts of residents on hospice more often than those of other residents and questioning why a resident is receiving hospice when the nursing home Avoiding Attention and Stigma from a could provide the same care. Death in the Facility As a result of this heightened scrutiny, administrators Providers admitted that a factor in hospital transfers is the and DONs feel extra pressure to justify the involvement extra attention paid, and stigma attached, to the facility of hospice. This can have a double-edged effect: On one and to on-duty staff because of a resident death. A death hand, administrators may be more reluctant to suggest at the facility can mean added scrutiny from state and/ hospice for residents; on the other, if hospice is used, the facility may restrict or withhold its own delivery of or local agencies, including, at times, even a police visit. some end-of-life care. And a record of deaths in a facility may lead to a negative perception within the nursing home industry. As a result, when staff members recognize that a resident is actively Financial Considerations dying, they may tend to send that person to the hospital Providers and experts in this study pointed to financial to avoid the death occurring in the facility. factors that may inhibit facilities and attending physicians from providing comprehensive palliative care. The study Nursing Home Self-Perception as a Barrier participants were uncertain, however, about the extent to to Palliative Care which these matters were determinative of, as opposed to Many of those interviewed in this study noted a merely contributing to, care decisions. connection between the poor public image of nursing homes and the lack of comprehensive end-of-life care. One of these factors is that Medicare and Medi-Cal For years, the nursing home industry has been trying to (Medicaid) reimbursement structures may provide change public perception of their facilities from places financial benefits to a facility when a resident is to die to, instead, places to get better. As part of this Improving End-of-Life Care in California’s Nursing Homes  |  5 Ambivalence Toward Hospice establish a specific palliative care framework within the Providers in the study expressed considerable institution. Notably, not one of the nursing facilities ambivalence about hospice in nursing homes, represented in this study has a formal palliative care stemming from a combination of logistical, financial, and program. interpersonal issues. Financially, hospice can work either to a facility’s benefit Opportunities for Improvement in Nursing or detriment. Hospice nurses and aides relieve facility staff of some care duties, and hospice can cover the Home End-of-Life Care cost of some equipment. Also, Medicare may designate The participants in this study contributed a number of some residents as hospice inpatients, paying the facility ideas for improving end-of-life care in California nursing at a higher rate. However, if a resident is referred to homes. Some suggestions focused on developing programs hospice before all his or her Medicare SNF days are to expand awareness of end-of-life choices and to facilitate exhausted, the facility would receive a rate lower than the SNF rate. the preparation of easily comprehensible, effective advance directives. Others focused on improving training Relations between facility and hospice staff members can also be complicated. Some facility staff appreciate for facilitating end-of-life decisions as an integral part of hospice nurses’ expertise and welcome the hospice staff responsibilities. There were also recommendations staff’s taking on of certain duties. Also, some nursing to help ensure that decisions about hospital transfer are facility DONs and LVNs are glad to receive palliative care the same no matter when a change occurs in a resident’s and other end-of-life care training from hospice nurses. However, some nursing home staff members chafe at medical condition. the interventions of hospice providers, complaining of poor communication with hospice staff, loss of control 1. Improve End-of-Life Care Skills over resident care, and the failure of hospice to provide Palliative care skill-building should be incorporated into expected care. There can also be logistical problems because facility and hospice nurses cannot give or take required continuing education for nursing home medical orders to or from each other. Hospice management directors, administrators, nurses and physicians, and of a resident’s care plan can also cause friction. And could perhaps even be mandated — similar to dementia some nursing home providers contend that hospice was care education for certified nursing assistants (CNAs). designed for the cancer patient, and believe that the There already exist a number of programs designed to model does not work as well for other facility residents (e.g., those with congestive heart failure, dementia, improve nursing home staff awareness of and competence COPD). in end-of-life care, including: K The End of Life Nursing Education Consortium (ELNEC) project, a program of the American approach, administrators promote — to residents, families, Association of Colleges of Nursing and the City and staff — the prolonging of life. Within this paradigm, of Hope Hospital in Duarte CA, provides nursing however, there is little space for difficult discussions about faculty, staff development educators, and nurses with end-of-life matters, and resistance to the very concepts of training in end-of-life care so they can train nursing end-of-life care and the dying process. Perhaps tellingly in students and practicing nurses. One course (ELNEC- this regard, fewer than half of this study’s facilities review Geriatric) in this “train the trainer” program is residents’ deaths to assess quality of care at the end of life. developed specifically for nursing home staff. Also, many nursing facility leaders believe that the routine K Respecting Choices, developed in Wisconsin, is a care they provide is already “palliative.” As a result, they comprehensive approach to advance care planning. see no need to enhance end-of-life care services or to It focuses on professional training and organizational 6  |  California HealthCare Foundation change that would take place throughout a health The POLST Paradigm organization or community. One aspect of the The Physician Orders for Life-Sustaining Treatment Respecting Choices curriculum addresses nursing (POLST) is a bright pink form that translates the home communication specifically related to wishes of an individual about life-sustaining medical treatment into a set of physician’s orders, signed by Physician’s Orders for Life Sustaining Treatment both physician and patient. Completing a POLST is (POLST). much more significant than simply filling in a form: It requires physicians and other health care providers to K Palliative Care Educational Resource Team engage patients with serious, life-limiting illness in a (PERT) is an educational program for licensed discussion about their preferences for end-of-life medical nursing staff and CNAs. The program developers interventions and intensity of care. The form transfers (led by Mary Ersek, Ph.D., R.N., of Swedish with the patient, and must be honored across all settings of care. Medical Center in Seattle) have tested a Train-the- Trainer format in which the curriculum is taught to Oregon initially developed the POLST system in the early 1990s to address a common challenge: Nursing educators, who then conduct in-service training in home residents were being transferred to emergency their own facilities. rooms without any information to guide the staff there about patient preferences for intensity of interventions. K A program for CNAs under development by the The POLST paradigm has been adopted by West Virginia Coalition for Compassionate Care (CCC) focuses on and Washington, as well as by parts of 12 other states. normalizing death in nursing homes. National groups have developed excellent resources that could be useful in the adoption of POLST in California, especially the Respecting Choices curriculum for training 2. Address Provider Concerns About Regulatory health care providers on how to introduce the POLST Issues form and elicit patients’ wishes. In 1997, an interorganizational statewide task force was Since August 2007, eight community coalitions in formed to improve end-of-life care in California skilled California have been working to implement POLST: in nursing facilities. Known as the ECHO (Extreme Care, Humboldt, Mendocino, Riverside, Alameda, Ventura, Humane Options) Long-Term Care Task Force, its Yolo, Sacramento and Santa Clara counties. Leadership for the spread of POLST in California is provided by the members included the California Department of Health California Coalition for Compassionate Care, based in Care Services, the California Association of Health Sacramento, CA. Facilities, Aging Services of California (then known as the California Association of Homes and Services for the Aging), the California Board of Registered Nursing, and other healthcare professionals, long term care Since 2000, there have been sporadic organized efforts to representatives, and consumer advocates. The task force address end-of-life care in nursing homes, but nothing produced a set of recommendations to improve end-of- on the scale of the ECHO Task Force. Given the high life care in nursing homes that were consistent with degree of turnover in nursing homes, consistent focus on patient-centered care and also complied with regulations this issue is needed, and reanimating the task force could governing nursing home care. The California Coalition be very helpful in this arena. The active engagement for Compassionate Care field-tested the recommendations of the Licensing and Certification Program of the in 1999 and used them extensively in statewide training California Department of Health Care Services in the task programs in 2000. The ECHO recommendations are force would help allay provider fears about developing available for use, along with educational materials, at programs that do not fit into the regulatory framework. www.finalchoices.com. Improving End-of-Life Care in California’s Nursing Homes  |  7 3. Expand the Use of Advance Directives care specialist: charge nurses specially trained, and present The task of increasing the use of advance directives must on each shift. With proper documentation in the chart target the public, nursing homes, and — since directives when a resident’s condition changes, the end-of-life care must be signed while the person is competent — those specialist could call the attending or on-call physician and in the health care system who see patients before they convey the resident’s condition in the specific context of become nursing home residents: physicians, home health the resident’s end-of-life care preferences, reducing the care staff, residential care facility staff, senior services tendency to transfer residents to the hospital as a fallback professionals, and hospital personnel. position. With regard to nursing homes themselves, the Nursing home social worker. Initiating end-of-life nursing home membership organizations — California conversations with new residents might be handled well Association of Health Facilities (CAHF) and Aging by a nursing home social worker. However, individuals Services of California — could create a target number in that role in California do not necessarily have a social (perhaps 75 percent, initially) of residents who have an work degree, and may have had little experience dealing advance directive. Trade associations could be important with death and dying. Focused end-of-life care training coordinating bodies for pilot educational and training could both allow the social worker to take on this job programs. If the rate of advance directives became a and at the same time raise the status of the social worker reported quality measure for nursing homes, the rate position in the facility. would likely improve. Similarly, inclusion of advance directive percentages in pay-for-performance analysis 4. Adopt “Physician Orders for Life-Sustaining would likely increase their use. Treatment” Over the next few years, there will be increasing While the day of admission may be too stressful a opportunities for nursing homes in California to engage time to focus on advance directives, facilities should be in community coalitions and other efforts to promote encouraged to initiate the conversation with a resident the use of POLST. Interested facilities can find out more and family within the resident’s first two weeks at the about POLST online at: www.finalchoices.org. facility. Because of the costs involved, simply calling for added staff to address this systemic problem is not likely to produce widespread results. Instead, existing staff might be better deployed to engage residents and family in end-of-life care planning, including the preparation of advance directives, and to ensure that end-of-life care preferences are followed when a resident is actively dying. End-of-life care specialist. With additional preparation and support, the charge nurse on duty should be able to communicate not only a resident’s condition but also end-of-life care preferences to the responsible physician, and to carry out treatment orders. To increase the likelihood that such preferences will be fully understood and implemented, facilities could create an end-of-life 8  |  California HealthCare Foundation Conclusion About the F o u n d at i o n There are a number of barriers to providing appropriate The California HealthCare Foundation is an independent end-of-life care to nursing home residents. California’s philanthropy committed to improving the way health care overall poor record regarding completion of advance is delivered and financed in California. By promoting directives among the general population is not remedied innovations in care and broader access to information, our among people in nursing homes — those most in need goal is to ensure that all Californians can get the care they of clarity about end-of-life wishes. Even when some need, when they need it, at a price they can afford. For more treatment preference documents are prepared, they are information on CHCF, visit us online at www.chcf.org. too frequently incomplete, ignored, or overridden. This poor preparation of residents and families for end-of-life care, plus lack of end-of-life care training among nursing home staff, and systemic pressures against delivery of comprehensive palliative care in the nursing home, results in unwanted treatment, unnecessary hospital transfers, and end-of-life scenarios that run counter to the best interests of many residents. In response to this situation, providers in the field are identifying ways to increase appropriate palliative care at the end of life for nursing home residents, without necessarily requiring large amounts of money or significant changes in care. These include public and professional education programs, projects to improve and increase the use of advance directives in nursing homes, adjustments in staff roles to clarify end-of-life choices and to ensure that they are honored, and implementation of new programs such as POLST. About the Author The HSM Group, Ltd., based in Scottsdale, Arizona, is a health care consulting business. It provides market research, training, economic models, consulting, and strategic planning to many areas of the health care industry, including managed care organizations, health systems and hospitals, pharmaceutical manufacturers, medical products manufacturers, and health care trade organizations. More information on HSM is available at www.hsmgroup.com. 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